Thursday, May 16, 2013

And then you shift your priorities.

This blog has been pretty quiet for the past month. Sometimes I get busy and I post a lot, and then sometimes I get busy and I don't post at all. Most of the time it's because life has gotten hectic with small things - rarely with One Big Thing.

But this time it was One Big Thing. My daughter Avery, whose real name I'm using here for the first time, got very sick on the last weekend of April, with what I thought was a stomach bug. On the third night, when the vomiting started again and she had been hyperventilating for several hours and the bad feeling I had just wouldn't go away, I took her to emergency.

Within about 3 minutes the triage nurse had it figured out. At first he thought she was hyperventilating from anxiety after all the vomiting. You could see, too, that she was badly dehydrated. She breathed into a paper bag for about 45 seconds while he was asking me her date of birth and so on, and suddenly she took the bag off her face and gasped, "I might throw up." He smelled her breath and reached for a glucometer.

Do mothers go into denial sometimes? Absolutely we do. I had noticed the frequent urination over the past couple of weeks, but I had put all my anxiety into the kidney disease basket...in fact I had decided to ask her doctor to order a 24-hour urine collection.

But as soon as I saw what he had in his hand, I knew what the bad feeling was. Once or twice over the past month I thought "She's been up to pee twice tonight. Diabetes? No, don't be silly. Don't overreact."

Her blood sugar was 23.5.

It's a surreal feeling to see an entire emergency room unit scramble into action at 3 AM, because your daughter has a stomach bug. It's a surreal feeling to sit next to your 9 year old - whose eyelids are barely visible, her eyes are so sunken - biting your tongue because all you can think to say to the doctor is "You must be mistaken." It's a surreal feeling to watch them, when they can finally get a line in to her shrunken and dehydrated threads of veins, put insulin into her IV.

And then to watch the colour and the life come back into your daughter, and to know it's not just the saline, the phosphorus and the potassium, but because she is getting dextrose and insulin.

Insulin. "But - but -" I think to myself stupidly, "Insulin is only for diabetics."

It can't be. It can't be. She's perfectly well. She has always wasted away when she has a virus - all her life whenever she gets a cold she shrinks down to a wisp, and then within a few days she plumps back up. You must be wrong. There's some other explanation, I know it.

Can't we talk about this?

I want what's behind door number two.

But what we got was Type 1 Diabetes. And what nearly killed Avery that night was diabetic ketoacidosis. She had every one of the symptoms on that linked page, except for coma and, thankfully, some of the symptoms listed under 'cerebral edema'.

We spent five days in hospital while they slowly brought her blood sugar down and her electrolytes up. I only realized how close she had been to fatal complications when the doctors and specialists who visited her every day would mention small things: things like "I haven't seen a child that sick from diabetes for a very long time." (That was from the pediatrician - himself a Type 1 diabetic.) "Avery, today is the sickest you will ever be in your life, I promise. You will never be this sick again."

And "She was very sick," said one nurse to another, then the diabetes nurse educator added to both of them, "She was incredibly sick."

I can't even describe how much better she looks in this photo.

I wish I had taken one 12 hours earlier - you wouldn't think it was the same child.

We have been home now for 12 days. Our whole life has changed. From a household that would lie reading books in bed until 10.30 in the morning, shuffle into the kitchen and throw a few pieces of bread into the toaster, we have become a family who does sugar checks every four hours at minimum, and schedules (unbelievably balanced) meals for 9:00, 1:00, 6:00 and 9:00. Nothing gets in the way of mealtimes anymore - because I can't manage it all, in my own mind, unless there is some predictability built into the system. I have to know exactly what is going in to her body, and administer insulin within a certain timeframe around her meals.

My crappy little entry-level Samsung Galaxy smart-phone has become my bestest, best buddy. I have alarms set for 2 AM, 5 AM, and 8 AM. I have an app that links to a website where I log every single thing Avery eats, with a carb count for all of it, as well as the result of every finger-stick blood sugar test she does (we're averaging about 8 or 9 a day), and every injection she gets of both kinds of insulin. I had to get a text plan so that I could contact the pediatrician four times a day with her pre-meal blood sugar numbers, and he could text me back with the dosage.

Will we be okay? Yes. We will be okay.

Will this settle down so that I don't need to keep such obsessive records of her food? Yes. I'll get used to it.

Will I eventually know the insulin dosage myself, so that I don't need to text the pediatrician? Yes. In fact they're giving me "the math" tomorrow, and then I'll be doing my own insulin calculations.

Will I ever, ever get used to the fact that my daughter has Type 1 Diabetes?

I'm sure I will. The disease is manageable, if not controllable. The daily grind of it will be exhausting, but we are willing and able for it...after all, we still have Avery with us. The tests, the injections, the careful juggling of food and exercise and meds...all of that is cake compared to my child nearly dying.

The question is, will I ever forgive myself for not seeing the signs of it, and therefore allowing her illness to progress long past the point of danger. Will I ever forgive myself for all the ginger ale and popsicles I fed her, thinking her blood sugar was low after all that vomiting?

15 comments:

You know what I think: if you were a physician and you failed to connect all those dots, I'd have some stern words for you. If you had spent 6+ years of your life in medical school, then yes, you should have put all the clues together.

But if you're a fantastic, loving, tender, gentle, sparky Mom who is doing what she can to help her sick little baby, and giving popsicles and ginger ale to settle her little queasy stomach, (because that always works) and thinking, when she's in the bathroom for the second time in the night, that she has been drinking too much pop, I think you did a spot-on job. When your gut told you to get your butt down to emergency, you listened.

Avery will thrive under your care. Nobody else would have done a better job than you did. If it were me and my daughter who went through this ordeal, would you blame me? I don't think so.... give yourself the same grace that you'd give to others.

When Alexandra was two weeks short of her second birthday my husband came home after being out of town for work that week. He took one look at her and said, "Why is she all puffed up?"

It wasn't until he said those words that I realized they were true, and that on some level I had known it for days.But seeing it slowly unfold before my eyes gave me a different kind of vision than he had walking in and seeing the profound difference in her from the week before.

I had wondered why she had had so few wet diapers, and more than once looked at her face and wondered when she had got so chunky. Still, I wasn't able to connect the dots.

The best advice I can give to you, as the mom of a daughter with a serious medical condition, is to forgive yourself. I am so glad she is stable, and that you listened to that voice inside your head and got her to emergency. THAT is what you need to focus on. Hugs to you...

Because you are you, and because you are a stellar mom, you will empower Avery to take charge of this disease and not let it take charge of her. And her diagnosis story will be one she and you tell others in the years to come, with a slight catch in your throat and a whole lot of love for each other.Much love to all of you.

Every mom has questioned her actions at some point. You are no different. What matters here is the outcome. Avery will be Ok. You all will be OK. AND you have share some valuable tips and links for us to keep in the back of our minds if this happens with our kids. For that, we are grateful. Take care and sending you hugs up the Island. Erin.

Oh, hugs to you! Things will get easier. There's an answer to coping with what was behind Door #1. The answer involves a definite period of adjusting to the new normal, though!

As a mom of a special needs kid (about to become a special needs adult in July, ACK!), I empathize with this rough introduction and learning curve. Hang in there! You still have her to love, and Door #1 didn't come stamped with an expiration date. (If it did, I'd *really* be sniffling now, not just semi-sniffling.)

And yes, sometimes that which is so obvious once the last dot gets plopped into place can be invisible for a LONG time. When my son (not special needs) was around 5th grade, we decided he needed speech therapy to help him learn the 'r' sound. It just wasn't in my skill set. The evaluation showed he was missing 10 other English sounds too. Oops! Hey, my training is in transcription, understanding what the other person says. I never listen to the sounds that make it up!

um, what everybody else said.You did things right. You really did.And yes, you were lucky, but you were smart and loving and did things right.The nightmare of this will fade; it really will. God bless.

I have been reading tour blog for a very long time without commenting-- because, that is what I do. I am a mother and I have friends that are mothers and I can tel, you we all miss something. Some of it is ultimately of no consequence, and some of it is not. From the hidden stress fracture in a soccer standout, to the pot experimentation of an introvert, we can miss it. Outpr children are what they are and we are what we are. You could no more have anticipated a serious illness than another mom could have anti paged a drug problem. If we knew in advance what we were in for, it wouldn't happen. Thankfully, she is treatable and the disease is manageable. It isn't your fault for not thinking the worst.

I honestly would have done things exactly the same. We never think that the Big Bad is really what's going on until it smacks us in the face. You are a loving mother and your sweet girl won't remember things the same way you do. She'll remember how you took care of her when she got sick and nursed her back to health.

Just so thankful for the care Avery got all the way through, including from you and that she is okay!

I still haven't forgiven myself for my son falling from a counter top at less than three months old, after I had placed him there in a baby carrier and turned my back for a moment to make a sandwich. He landed on his head. I bargained with God that day! He is 43, brilliant and wonderful, and there were no ill effects but my own relentless guilt for being so careless--still, after all these years when I think about it.

I can really feel for what you went through. Even me (a nurse) can be "blind" when it comes to family. My step daughter's 3 month old daughter seemed to be always hungry, and was peeing lots. We put the hunger down to a growth spurt and the wet nappies down to the fact that she was feeding so much. Turned out she was one of the youngest ever in Australia to be diagnosed with type 1 diabetes and was critically ill when she was taken in to the hospital. She is now 12 year old, and doing exceptionally well.